Hi Serena!! Thanks for responding, and no need to apologize!!! I'm so happy to see sweet Keely has been without a seizure since Dec. That is fantastic!!! I have an appt. with Dr. Marsden Tuesday, so I'm going to ask him about the Zonisamide. I wouldn't mind trying it just on it's own. The Pheno is really hard on Nookie. He's just so sensitive to everything, so I want to use that again only as a last resort. He's done great on the herbs until the last couple of months. His last seizure would be considered SE. It lasted right around 10 minutes (the actual "ictal" phase) and was terrifying. I really believe the Valium is what pulled him out. If we didn't have that, we may have lost him that night. I didn't know Keely always clustered! I knew she did a couple of times, but not the "norm". That night Nookie did was the first time.
As for the Valium protocol, we give him 2 vials, rectally, while he's seizuring. We've never had to use any additional. I did talk to Dr. Marsden and he said if we feel he needs it, we can give him a second dose after 20-30 minutes. We also have some 5 MG tablets we can give if he starts clustering as a norm (I'm
'ing the last couple were just freak events). The pattern changing from daytime seizures to the middle of the night freaked me out. Though I think it's better for our sweet boy because he wouldn't have that fear that hits before the seizure if he's asleep when it happens. But it sure is a rude (and scary!) awakening for us. Thank you again for responding, you have no idea how much I appreciate it HUGE
to you!! And please give Connor and Keely hugs from Nookie, Montana and myself
I'll let you know what Dr. Marsden says!!